Cancer is a very personal thing. Seemingly, whenever the subject comes up, someone has a side, a position, an experience. Not just an experience, but a life changing defining moment in an individual’s life. A disease that for some is not open for discussion, but for many is seemingly the “law” when dealing with or approaching cancer. They know better. They know better because they have lived it.
No one knows his or her own experience better than one’s self. The cancer experience is a lifelong, lasting brand seared into one’s head and on one’s heart.
Somehow, cancer’s impact among individuals and families, despite the bond at some levels, makes us virtually more like islands than continents.
There is nothing that connects us but loss, and that is even too complicated and painful to discuss.
Cancer comes at people with such a force that just hearing the word causes people to react, or rather “jump and run.”
And for good reason, we have all been a party to the explosion in our lives that cancer creates.
News of cancer is all about running for your life.
It is the trauma of that experience that puts us in that ready-set position of having very specific thoughts on cancer.
For those of us who have been there before, we know how exactly we are going to handle it.
We are experts in our cancer experience.
We, as a society, react in powerful ways to cancer. Yet we do little to nothing as a whole to fend cancer off.
Recently, I wrote a review of a book on hospice care that I found helpful.
In my personal experience, I believe that a hospice would have been a better answer in a few cases where conventional treatment was clearly just not the answer relative to one’s quality of life. Sometimes with hospice care, there is the hope of providing an opportunity for the patient for a quality of life and, in turn, living instead of dying.
Interestingly, I did hear from one person who wished to share their thoughts.
My caller expressed, that at some level, there must be something between hospice and conventional medicine – that hospice was throwing in the towel.
Would that then be palliative care for those patients and families who want and need comfort at any stage of any disease, whether terminal or chronic? With a palliative care program, there is no expectation that life-prolonging therapies will be avoided.
That said, as options depending on where you live and what is avaialble the options of hospice and palliateve care can also be fuzzy as there are some hospice programs that will provide life-prolonging treatments, and there are some palliative care programs that concentrate mostly on end-of-life care.
“What about for the times when they tell you there is nothing more they can do?” My caller continued, “Those people then go home and jump on the Internet seeking alternatives, seeking off-the-grid treatments, where there have been times when individuals have beaten the odds.”
These are all good questions. So now I must ask why in the cancer conversation are we not pursuing some of the alternative off-the-grid solutions? Are we marginalizing these possibilities?
Previously, I have suggested there is no spreadsheet that will include the work for prevention and end-of-life issues when it comes to investing in people who want to invest in the cure. I get that. I more than anyone wanted the cure for my family and friends that I have loved and lost.
And now, after speaking to this particular parent whose child died from cancer, I ask myself if in fact we should also be devoting resources to those treatments that may be considered off-the-grid.
We as an organization have been especially fortunate to have a wide range of people’s support from both near and far. Individuals, like myself who also wish for answers relative to cancer prevention.
Our social networks span more than 30 countries, some names I cannot always pronounce, and at times communications need to be translated.
That said, we have a whole range of people expressing not only their loss but sometimes their anger and rage, and sometimes it just happens to be me on the recieving end.
There is nothing more frustrating for a family that struggles for equal footing and control in the cancer storm. It often brings out the worst in people. And who would expect anything but the worst?
It is exactly these core issues, this vulnerablitity that make sharing priorities complicated.
Recently in a discussion with a friend, we had agreed that there is no room for speculation in science, but as I reflect, I now wonder if thats really accurate. Isn’t it exactly speculation that takes us to the next step of seeking evidence-based science? Shouldn’t we, at some level, do a little more contemplating or considering doing things differently?
I look back at that cancer timeline and I see that Richard Nixon launched the War on Cancer in 1971 and more recently the American Cancer Society just celebrating its 100th birthday.
All I can think is tick- tock!
Do you see where I am going?
We need to be doing things differently.
We need to be asking more questions and we need to be getting more answers. We now have more cancer, not less.
Because cancer is so personal, my question is, how do we as a culture prioritize what our interest is relative to prevention and stopping cancer at the source?
How do we drop our preconceived thinking to get to that same place on prevention?
For those of us who are advocates and educators on the issue, how do we all get on the same side of the fence when it comes to prevention? What is it going to take to share priorities on prevention?
Often, advocates, educators and even scientists have an agenda that frequently have to do with competing for funding or an opportunity for some piece of the “cancer” stage. We are not yet in a place where people are ready to really understand what it means to collaborate on a real level, allowing walls to come down, and really get to work to prevent cancer for future generations.
If we are ever going to have a chance at preventing cancer, we need to do it together.